Promoting Participation in Leisure Activities in School-aged Children with CP

Annette Majnemer PhD, OTMcGill University

Montreal Children’s Hospital-MUHC

Team of investigators

Rena Birnbaum MSc, OTGevorg Chilingaryan DMD MPHNathalie Chokron BSc, OTMary Law PhD, OTChantal Poulin MDPeter Rosenbaum MD CMMichael Shevell MD CMDenise Keiko Shikako-Thomas OT,

PhD candidate

Children with CP May have difficulties in their ability to

move, problem solve, socialize and communicate Associated with activity limitations At risk for lower participation in social

and recreational activities

Leisure Participation Participation

Taking part or being involved in everyday life activities and roles

Leisure activities Those activities that an individual chooses to

participate in during their spare time because they find them enjoyable

Participation in leisure activities Important in fostering friendships, enhancing

skill competencies, developing personal interests and identity

Participation in Children with CP Few studies on children with

disabilities

Lower levels of participation Lack variety More passive, home-based

activities Preliminary evidence suggests

that contextual (personal, environmental) factors may be important predictors

Systematic Review Shikako-Thomas, K. et al, Determinants of

participation in leisure activities in children and youth with cerebral palsy: Systematic review. Physical & Occupational Therapy in Pediatrics, 28(2): 155-169, 2008.

Determinants include:

Age, gender, socioeconomic status Activity limitations Motivation Family coping, preferences Environmental resources and supports

Rationale

Paucity of information on participation in school-age children with CP Broader understanding of involvement in

leisure activities needed• Are children participating in activities of their

choosing? Identification of key determinants for

development of health promotion initiatives• Focus beyond body functions as predictor

variables

To what extent do children with CP participate in leisure and recreational

activities?

What factors are most important in ensuring a high level of participation and enjoyment?

Primary Study Objectives Describe the frequency, diversity and level of

enjoyment of leisure activities in children of school-age with CP

Identify factors that predict participation Biomedical Body function and activity Personal factors Environmental factors

…as part of study on participation and quality of life of children with CP Majnemer et al, Journal of Pediatrics, 2007 Majnemer et al, Quality of Life Research, 2008 Shevell et al, DMCN, 2008

Study Design Consecutive series of children with CP

Historical cohort Letter sent to parents describing study

For children between 6-12 years of age: (2003-06)

Following consent, appointment made for testing at the Childhood Disability Research lab, MCH

Blinded Evaluations Occupational

therapist and/or physical therapist

Psychologist Neurologist

Parents (and children, when feasible) completed: Self-report

questionnaires

Outcome Measure Children’s Assessment of Participation

and Enjoyment (CAPE) Forward/back translated into french

Involvement in voluntary leisure activities outside of school

• Formal (structured, preplanned) and informal (spontaneous) activities

Administered to those children who could actively participate in completing the measure

CAPE scoring

Diversity: Number of

activities

Intensity: Frequency of

participation

Enjoyment

5 domains:• Recreational• Social• Active-physical• Skill-based• Self-improvement

Determinants Biomedical factors:

Type of CP, history of neonatal difficulties, etiology Developmental & functional status:

Leiter Intelligence Test, Strengths & Difficulties Questionnaire, Gross Motor Function Measure, Vineland Adaptive Behavior Scale

Personal factors: Gender, SES, age Motivation- Dimensions of Mastery Questionnaire

Environmental factors: Family functioning- Impact on Family Scale, Parenting

Stress Index Current rehabilitation services Segregated vs. integrated schooling

Results

Performance on the CAPE

67/95 children completed the CAPE 59% level I, 18% level III-V 66% regular school 76% receiving rehabilitation

services

Mean age: 9 years 7 months (6.1-

12.9 years)

CAPE Mean Scores Informal

Intensity: 3.30.8 Diversity: 23.45.0 Enjoyment: 4.10.5

Formal Intensity: 1.20.7 Diversity: 3.72.0 Enjoyment: 4.10.9

Leisure Participation:

Enjoyment levels similar to peers Most popular activities (>50%):

Recreational: crafts/drawing/coloring; computer/video games; pets; pretend play; toys; walking/hiking

Social: talking on the phone; hanging out with friends; listening to music

Self-improvement: reading, doing a chore; homework Skill-based: none Active-physical: none

Leisure Participation: Least popular activities (<6%):

Martial arts, art lessons, musical instrument, paid job Limited involvement in community-based

activities: 76% not part of community groups 85% no volunteer work 87% not part of school clubs

Predictors of Participation Intensity (how often) Recreation (r2= 0.18, p=.006)

Behavior problems (conduct)

Mastery motivation Active physical (r2= 0.42, p<.0001)

Motor function Etiology

Skill-based (r2= 0.09, p=.015)

Rehabilitation services

Social (r2= 0.33 p<.0001)

VABS adaptive behavior Mastery pleasure

Self-improvement (r2= 0.44, p<.0001)

Older children Communication Parental stress (child) -

Predictors of Participation Diversity (how many) Recreation (r2= 0.33, p=.0008)

Behavior problems (conduct) Mastery motivation VABS Daily living skills Parental stress –

Active physical (r2= 0.23, p<.0001)

Motor function

Skill-based (r2= 0.10, p=.014)

Rehabilitation services

Social (r2= 0.36, p<.0001) IQ Mastery pleasure

Self-improvement (r2= 0.40, p<.0001)

Older children Communication Motor function

Predictors of Participation Enjoyment (how much fun) Recreation(r2= 0.25, p=.006)

IQ - Behavior problems (peers) Parental stress (child) -

Active physical (r2= 0.35, p<.001)

Parental stress (child) - Rehabilitation services

Skill-based (r2= 0.29, p<.001)

Behavior problems (hyperactive) - Gender

Social (r2= 0.16 p=.015)

Behavior problems (peers) Parental stress (child) -

Self-improvement (r2= 0.38, p<.001)

Negative react to failure - Parental stress (child) - Gender Age at assessment -

Strategies for Intervention Parental stress and coping needs

to addressed Rehabilitation programs to

promote leisure skills for children with mild motor impairment

Motivation Identify and facilitate motivating

leisure activities Address fear of failure, self-concept,

confidence and self-efficacy Interventions to decrease

behavior problems (hyperactivity, peer relationships)

Leisure Activity Preferences:

Using the Preferences for Activities of Children (PAC)

Preferences Having a choice between

alternatives and the opportunity to choose those activities that are most satisfying Influenced by level of persistence,

perception of the task, activity limitations, past experiences, environmental barriers

Preferences for Activities of Children (PAC) CAPE (does do) vs. PAC (would like

to do): Sort CAPE activities into 3 piles:

• “I would really like to do”• “I would sort of like to do”• “I would not like to do at all”

Results Social and recreational activities

were most preferred Informal>formal

Self-improvement least preferred

CAPE vs. PAC Many of the activities they commonly

participated in were the activities they preferred most (e.g. computers, hanging out, crafts, toys)

Examples of activities that they preferred (>90%) but didn’t commonly do: Individual physical activities, games/puzzles,

dancing, shopping, movies/outings, going to someone’s house

Few preferred (<10%) Track and field, paid job, art lessons

CAPE vs. PAC Correlations between CAPE & PAC

Moderate for recreational and skill-based activity domains

Lower for physical, social and self-improvement domains

Modest correlations (<.5) suggest that preferences are not strongly associated with involvement

Factors Associated with Leisure Activity Preferences Younger children preferred active-

physical, skill-based and self-improvement activities Social & recreational activities not

influenced by age Girls preferred skill-based activities

Factors Associated with Leisure Activity Preferences Children with more severe

limitations (and those in special schools) preferred skill-based activities

Mastery motivation Persistence with motor tasks skill-

based and active-physical activities Low reaction to failure social and

self-improvement activities

Next Steps… Qualitative study (interviewing adolescents

with CP)• Majnemer, Shikako-Thomas, Lach, Shevell

Participation an important determinant of quality of life

QUALA Study:Quality of Life And Leisure in Adolescents

Determinants of quality of life and participation in adolescents with cerebral palsy

Summary of Findings Children with CP are

involved in a variety of formal and especially informal activities

They experience a high level of enjoyment of leisure and recreational activities

Summary of Findings Involvement in formal activities:

May be mediated by family preferences, not by child and environmental factors

Involvement in informal activities: Impairments and activity limitations Mastery motivation Family stress, coping Rehabilitation services

Practice Implications Knowledge about leisure

participation and its determinants will assist with Establishing meaningful goals with the child

and the family Planning effective services and programs Guiding public policy, advocacy

Special thanks to:

Nicholas Hall, Research CoordinatorNicholas Hall, Research CoordinatorOTs: Rena Birnbaum, Cynthia Perlman, Amy BrownsteinOTs: Rena Birnbaum, Cynthia Perlman, Amy Brownstein

Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Psychologists: Lisa Steinbach, Nancy Marget, Mafalda Porporino, Terry Viola, Chantal MartelTerry Viola, Chantal Martel

Statistician: Gevorg ChilingaryanStatistician: Gevorg ChilingaryanParents and children who participatedParents and children who participated

in this study in this study

Study funded by the Cerebral Palsy International Research Foundation (US)

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